Frequently asked questions
Throughout the site you'll find answers to most of your queries but on this page we've listed the most frequently asked. These have been divided into six main categories (below) to help make your search quick and easy.
General topics
What is The Anthony Nolan Trust?
The Anthony Nolan Trust takes back lives from leukaemia by managing and recruiting new donors to the UK's most successful bone marrow register as well as undertaking vital research leading to improvements in the effectiveness and safety of bone marrow transplants.
The Anthony Nolan is responsible for finding suitable unrelated donors for patients who require bone marrow transplants. Fewer than 30 per cent of patients who need bone marrow transplants are able to find a compatible donor within their own families. The rest rely on the generosity of strangers who have volunteered to donate bone marrow to anyone in need.
How does The Anthony Nolan Trust's Register work?
The Anthony Nolan Trust saves lives thanks to over 390,000 UK residents who have volunteered to donate bone marrow to any patient in need. The Anthony Nolan maintains a database of tissue-typing results of all prospective donors.
When essential bone marrow is destroyed by disease or by the treatment to eradicate leukaemia, blood stem cell transplantation from a matching donor provides the greatest chance of recovery. The donor's healthy bone marrow is infused into the patient's blood stream and, if accepted (engrafted), begins producing normal, healthy blood cells in the patient.
Is there a matching donor for every patient who needs a bone marrow transplant?
Over 5,000 patients have been given the gift of life through The Anthony Nolan Trust's Register. However, even with over twelve million donors on registers worldwide, a bone marrow match is not always available. Some patients have rare tissue-types that may be very difficult to match. In these instances, even with everyone's best efforts, we are sometimes unsuccessful in identifying a donor. It is for this reason that we urgently need to increase the size and diversity of our register. At any one time, there are approximately 120,000 patients throughout the world needing to find a suitable bone marrow donor. The Anthony Nolan Trust alone receives over 16,000 search requests in a year. Therefore we have an urgent need to recruit more donors to increase their chance of receiving a transplant.
How can I help The Anthony Nolan Trust save more lives?
You can help The Anthony Nolan Trust save lives by joining the Register, giving a financial donation to support our work or getting involved in fundraising events. We urgently need your help to raise both money and awareness. Contact us on 020 7284 1234.
Who can become a donor?
To join The Anthony Nolan Trust bone marrow Register you need to be aged between 18 and 40, (although once on the Register, your details will kept until you reach 60), in good health and fully committed to undergo the donation procedure if required. The Anthony Nolan Trust specifically needs to recruit more young and more male donors and those of black and minority ethnic backgrounds. For more details call us on 020 7284 1234.
How many potential bone marrow donors do you have registered?
Not enough. The Anthony Nolan Trust has a register of more than 380,000 potential bone marrow donors, but we urgently need more people aged 18-40 to join, and in particular we need more young and more male donors and those UK minority ethnic backgrounds to come forward.
Is The Anthony Nolan Trust a charity?
Yes, The Anthony Nolan Trust is an independent charity. It continually relies on financial support from individuals and companies.
Does The Anthony Nolan Trust spend money on things other than the Register?
Yes, The Anthony Nolan Trust conducts pioneering research into the treatment of bone marrow disorders and improving the effectiveness of bone marrow transplants.
How do I find out more?
To find out more about our lifesaving work please call The Anthony Nolan Trust on 020 7284 1234.
Why do people need bone marrow transplants?
Bone marrow, found in the centre of all large bones, is where new primitive blood cells, known as blood stem cells, are produced. Blood stem cells develop into mature blood cells: white cells (needed to fight infection), red cells (needed to carry oxygen to and remove waste from organs and tissues) and platelets (which are needed to stop bleeding).
Joining the Register
Why should I think about joining the bone marrow register?
If you join The Anthony Nolan Trust's Register you could save a life. It could be that you are the only person in the world who is a match for a patient with a life threatening illness. It could be one of the most important and rewarding steps you ever take.
Who can become a donor?
To join The Anthony Nolan Trust bone marrow Register you need to be aged between 18 and 40, (although once on the Register, your details will kept until you reach 60), in good health and fully committed to undergo the donation procedure if required. The Anthony Nolan Trust specifically needs to recruit more young donors, more male donors and those of UK black and minority ethnic backgrounds. For more details call us on 020 7284 1234.
What do I need to know before I join the Register?
Joining The Anthony Nolan Trust's Register is a long-term commitment to donate bone marrow to anyone in need. This commitment, made by a large and diverse group of potential donors, is what enables us to save lives. It is important that you fully understand what the donation procedure involves before you sign up.
What if I can't join the Register?
If you can't join the Register your help is still vital and there are a number of other ways in which you can help The Anthony Nolan Trust save lives. You can help by giving a financial donation or by getting involved in fundraising events. Alternatively, you could encourage others to join the register, particularly young and male volunteers.
How can I become a donor?
To find out more about how to join the register please call The Anthony Nolan Trust on 020 7284 1234.
If I join the Register will I definitely be asked to donate?
The majority of people on the register do not go on to become a donor. You are only called on to donate if you have a similar tissue-type to a specific patient in need of a bone marrow transplant. However, each and every individual on the register could be called upon to donate at any time over a period of many years. Please be aware that if you are found to be a suitable donor and decide not to donate this could be devastating news to the patient facing a life-threatening illness.
Could a recipient be anywhere in the world?
Yes, a donor could be giving the chance of life to a patient thousands of miles away or to someone just down the road. Whether near or far, you can be sure the person on the receiving end needs your help.
Do overseas donors help patients in the UK?
Yes, for all patients in the UK The Anthony Nolan Trust is responsible for undertaking a worldwide search to find the most suitable donor. By working with similar international registers we can search more than twelve million donors held on over 50 registers across the world.
What happens when I register?
You will be asked to complete a medical history questionnaire and a small sample of your blood will be taken so your tissue-type can be identified. This information is added to a confidential computer database. If a patient in need of a transplant has a similar tissue-type to someone on the register, that person may be selected to donate after undergoing further testing.
Does it cost anything to join the Register?
No, it is free to join our bone marrow register. The Anthony Nolan Trust will also reimburse any expenses you incur as a result of donating your bone marrow. These expenses include: travel expenses, accommodation, loss of earnings and any other out of pocket expenses incurred
What are the methods of donation?
There are two methods of donation - the more traditional bone marrow harvest and the newer, and increasingly used, peripheral blood stem cell donation (PBSC).
What does a bone marrow harvest involve?
A bone marrow donation under this method requires a two-night stay in hospital and under general anaesthetic the cells are extracted from the pelvic bones by sterile needle and syringe. No surgical incision is required and the blood stem cells replace themselves within 21 days.
Are there any side-effects to bone marrow donation?
For a bone marrow harvest there can be some short-term discomfort in the lower back, and tiredness. For this reason a five-day recuperation period is recommended.
What does peripheral blood stem cell donation involve?
To collect blood stem cells from the peripheral blood, the cells have to be encouraged to move from the bone marrow where they are made, out into the circulating blood stream. During the five days before the collection the donor receives daily injections of a growth factor (G-CSF) to mobilize the blood stem cells and thereby increase their number in the peripheral blood. These cells can then be collected on a cell separator machine in one or two collections lasting four to five hours each, in a process known as 'apheresis'. No in-patient hospitalisation is required and neither are general or spinal anaesthesia.
Are there any side-effects to peripheral blood stem cell donation?
For blood stem cell donation, flu-like symptoms may be experienced, but these resolve quickly after the collection and donors can return to normal duties in 24 hours.
Do donor and recipient get to meet?
The majority of Anthony Nolan Trust donors and patients never meet. It is essential for the success of bone marrow donor programmes that strict anonymity for donor and patient is maintained, both prior to the donation and for a period after the transplant. This is to ensure that there can be no suggestion of an unrelated donor being coerced or induced to donate for financial or other reward and to protect the right to privacy of both the patient and donor.
Current policy at Anthony Nolan is that when two years have elapsed, it may be possible to arrange direct contact, but only on the initial instigation of the recipient. However, some national policies prohibit totally direct donor/recipient contact.
Can I be specifically tested for my friend?
It's highly unlikely that two friends will share the same genetic profile. The best hope for any patient lies with the millions of potential donors who are already listed on bone marrow registries worldwide. The Anthony Nolan Trust is committed to matching these volunteer bone marrow donors, including your friend as long as donors are willing to donate to any patient, and meet the Anthony Nolan's eligibility requirements.
I have already been tested for a member of my family but now I would like to join the Register. How do I do this?
Contact The Anthony Nolan Trust on 020 7284 1234 and ask for the necessary application form/medical questionnaire to be sent to you. Complete this and forward it together with a copy of your HLA tissue typing results, which you should be able to obtain from the hospital where the testing was done. We will check your medical questionnaire and if you are medically eligible to join the Register, we will add your details to the Anthony Nolan Register of unrelated donors.
Could I be a donor more than once? If so, how often?
After the first donation, the donor is asked if they would like to stay on the register and donate again. Although unusual, The Anthony Nolan Trust has had several donors who have donated three times. Current policy permits a volunteer to donate blood stem cells up to a maximum of four times.
The kind of donors that are needed and why
Who can become a donor?
To join The Anthony Nolan Trust's register you need to be 18-40 years old (once registered your details remain on file until you are 60 years old), in good health and fully committed to undergo the donation procedure if required. The Anthony Nolan Trust specifically needs to recruit more young and more male donors and those of UK black and minority ethnic backgrounds. For more details call us on 020 7284 1234.
Why do you need to recruit more men?
It is a priority for The Anthony Nolan Trust to recruit more male donors because men can generally provide greater volumes of blood stem cells than female donors which assists with faster engraftment and thus reconstitution of the immune system post transplant. If there is a choice of donor for a patient in most cases a male donor will be preferred.
What if I can't join the register?
If you can't join the register your help is still vital and there are a number of other ways in which you can help The Anthony Nolan Trust save lives. You can help by giving a financial donation or by getting involved in fundraising events. Alternatively, you could encourage others to join the register, particularly young male volunteers.
Why do I have to be over 18 to join the Register?
In order to undergo the donation procedure the volunteer donor has to give informed consent. As bone marrow donation is voluntary and not of direct benefit to the donor, a guardian/parent is not able to sign on behalf of a minor.
Why is the upper age limit to join the register 40?
It is a priority for The Anthony Nolan Trust to recruit young donors as research has shown an improved outcome for bone marrow transplants if the donor is younger. If there is a choice of donor for a particular patient, the transplant centre will usually choose the youngest donor. Once you have joined the register you remain on it until you reach 60.
Why do you need to recruit more minority ethnic donors?
Quite simply, there are currently not enough volunteers on The Anthony Nolan Trust's register from black and minority ethnic communities in the UK. This includes African, African-Caribbean, Asian, Chinese, Eastern European, Mediterranean, as well as donors of mixed race background. For example, of the potential donors listed on the Anthony Nolan register, less than 4% of volunteers are Asian, and the figure is much lower for many other ethnic groups.
Is the ethnic origin important when matching donors and patients?
Ethnic origin is important when matching donors and patients. The 'markers' that are tested when searching for a suitable bone marrow donor are genetically inherited and often unique to a particular race. A patient in need of a transplant is more likely to discover a suitable donor amongst groups of people who share a similar genetic history to them. In practice this means that an African-Caribbean patient, for example, has the greatest opportunity of finding a donor within his or her own ethnic community. There are still too many patients in the UK from Black and minority ethnic communities for whom we are unable to find a compatible donor.
Is there more than one bone marrow register in the UK?
The Anthony Nolan Trust, The British Bone Marrow Register and The Welsh Bone Marrow Donor Registry are separate registers. The Anthony Nolan Trust is the largest register in the UK and is an independent charity. The British Bone Marrow Register and The Welsh Bone Marrow Donor Registry are both part of the National Blood Service.
Do I need to join more than one register?
No, you only need to join one bone marrow register. All UK patient searches are automatically referred to each of the three UK registries so joining more than one of them would cause duplication and waste valuable resources.
Does it matter which register I join?
By joining a UK bone marrow register you will be making an extraordinarily generous commitment and increasing the chance each patient has of finding a suitable donor. To join The British Bone Marrow Register or The Welsh Bone Marrow Donor Register you must also be a blood donor.
Restrictions to joining the Register
Are there any restrictions to joining the Register?
In order to join the Register, volunteers have to be medically fit to undergo the donation procedure. For this reason we ask you to complete a medical history questionnaire prior to joining the register, so that we can ensure that you do not have any of the conditions that prohibit bone marrow donation. Many of these are similar to those that do not allow blood donation. There are also some exclusion criteria to joining our register and these are published in our donor recruitment pamphlet, "Commit to a lifesaving procedure now", which can be obtained by contacting us on 020 7284 1234
I am a gay man. Can I join the Register?
Your sexuality in itself does not preclude you from joining the Register. Everyone wishing to join the Register will have to complete a medical questionnaire that also includes several questions relating to lifestyle.
Individuals of all sexualities at risk of transmissible diseases are excluded from giving bone marrow and therefore are excluded from joining the Register. Individuals who have participated in activities that put them at an increased risk for transmissible diseases, including injection of illegal / non-prescriptive drugs, or who have had unprotected sexual contact with an individual from a high-risk background, are not acceptable as bone marrow donors.
Laboratories
What happens to a blood sample after it has been taken?
Every blood sample taken from a prospective donor arrives at The Anthony Nolan Trust's Histocompatibility Laboratories for what is known as tissue-typing.
What is a tissue-type?
An individual's tissue-type is defined by the characteristics of six genes (A, B, C, DRB1, DQB1 and DPB1), collectively known as the human leukocyte antigen group (HLA). Testing for HLA groups, known as "tissue-typing", is usually performed on a small blood sample and involves analysing the genes that code for the HLA proteins.
How many different tissue-types are there?
The total number of different tissue-types is not known. The HLA genes that define our tissue-type are very variable. Therefore it is extremely unlikely that two randomly selected individuals would have identical tissue-types.
What does this mean for bone marrow transplant procedures?
The success of bone marrow transplantation relies on finding an acceptable HLA match. For a number of patients this match is an HLA identical sibling. However, 70 per cent of patients cannot find a compatible donor amongst their family and they need to find a compatible donor through a bone marrow register. The Anthony Nolan Trust maintains the largest such register in the UK and is continually looking to increase its size to help the 16,000 patients who are currently looking for suitable donors.
What work is done by your laboratories?
In 2006 the laboratories processed blood samples from around 400 new donors per week, typing a total 20,000 prospective donors, and over 4,000 Confirmatory tests on both donors and patients.
What other work is done by your laboratories?
In addition to tissue-typing prospective donors, the Laboratories also provide a tissue-typing service for bone marrow transplant centres in the UK. The laboratories also support the renal and liver transplant programme of the Royal Free Hospital in London.
What accreditation do the laboratories have?
The Laboratories have achieved accreditation from Clinical Pathology Limited (UK) and European Federation for Immunogenetics.
What expertise do the laboratories have?
The Anthony Nolan Trust prides itself on having one of the best groups of tissue-typing and immunology experts in the UK. The Anthony Nolan Trust has established a Donor Selection Advisory Committee. This group of senior Anthony Nolan staff will make available the Trust's understanding of the interplay of the many factors affecting transplant outcome, to advise transplant centres on donor choice.
Research
What is the Research Institute?
Established in 1996, The Anthony Nolan Trust's Research Institute is dedicated to research that aims, in general terms, to improve the outcome of bone marrow transplantation. Both basic and what is called 'translational' research (bringing basic scientific discoveries into clinical application) are carried out at the Anthony Nolan Research Institute.
What work does it carry out?
The Anthony Nolan Trust's Research Institute investigates topics related to pre- and post- transplantation practice: for example, how best to achieve an optimum outcome between donors and patients, and how to improve recuperation by preventing the complications of transplantation, namely disease relapse, graft-versus host disease (GvHD), or infectious diseases.
What are the main areas of your research programme?
The three main problems in bone marrow transplantation are graft versus host disease (GvHD), infectious diseases that affect patients after transplants and harnessing the transplanted immune cells to eliminate any residual tumour cells in the patient, the Graft-versus-Leukaemia (GvL) effect.
What funding does The Anthony Nolan Trust's Research Institute have?
The Research Institute is funded by a combination of internal and external funding. For example, in 2003 the Research Institute's total budget was £1.046 million and 69% was funded by The Anthony Nolan Trust.
What is the largest research project you are working on?
Amongst a long list of awards made to members of The Anthony Nolan Research Institute, we are pleased to announce the European Commission's decision to award a grant of £5.5 million to a research project led by our Scientific Director, Professor Alejandro Madrigal. The new research aims to make bone marrow transplants safer and more effective. 29 teams from 13 countries are taking part in the project.
What recent scientific articles have come from the Research Institute?
During 2003, researchers at The Anthony Nolan Research Institute published twelve articles (in scientific journals such as The Lancet and Bone Marrow Transplantation).
I'd like to give a financial donation to The Anthony Nolan Trust but I don't support charities that engage in animal testing. Does the Anthony Nolan Trust engage in animal testing?
The Anthony Nolan Trust does not use animals in any of the experimental work carried out in our laboratories or The Research Institute. We can achieve significant results and obtain the important information we require in order to improve the outcome of bone marrow transplantation without the need for using animals.
Does The Anthony Nolan Trust engage in Stem Cell research?
The term 'stem cell' is an ambiguous one, since it refers to any cell which is capable of continuous self-renewal together with the capacity to give rise to more differentiated progeny. The cells in the bone marrow that give rise to the cells of the blood are correctly called stem cells - in this case, haematopoietic stem cells (or blood stem cells). There are also stem cells in the bone marrow, called mesenchymal stem cells, which are thought to be able to give rise to other tissues, such as cardiac muscle. What people often refer to as 'stem cells' are embryonic stem cells, which carry the potential to give rise to any tissue in the body and which in some cases are derived from embryonic tissues. The Research Institute does not carry out research on such embryonic stem cells.
Cord Blood Bank
What is Cord Blood?
Cord Blood is the remaining blood in the umbilical cord and afterbirth when a baby is born. This is extra blood, which is discarded routinely and measures approximately one cupful.
Why is Cord Blood special?
Cord blood contains immature blood cells which grow and divide into different types of blood cells. These seed cells are similar to cells in the bone marrow and work in the same way as bone marrow transplant.
Why is The Anthony Nolan Trust planning to open its own cord blood bank?
We're the charity that takes back lives from leukaemia, and we need to explore all the avenues to help more people survive leukaemia and similar life-threatening conditions.
What are your exact plans?
Current plans are being developed to process and store umbilical cord at one site in the UK. It is too early to outline exact plans but more details will be released to the media in the coming months.
If you create a cord blood bank will you still need to run a bone marrow register for adult donors?
Yes. A cord blood bank would run alongside our bone marrow register of volunteers. We still need to recruit more people aged 18-40 to our register. The more people we can recruit, the more lives we can help save. Despite running a public cord blood bank in the future the core function of The Anthony Nolan Trust will still be to recruit more adult bone marrow donors aged between 18- 40 years old.
